So it's been forever since I've updated. Everything has been going great here the past couple of months. Evie has been diagnosed with ONH (optic nerve hypoplasia) along with the albinism. Yes, lots of people with albinism have ONH, about 20%, and Eves is one of the" lucky" ones that it effects. We got the diagnoses last fall but weren't given any info or help until the last few months. We were told at first that it's not the same with albinsim kids, that it doesn't effect them. Uh, I would beg to differ in Eves case. It most definitely effects Evie. It's been awesome to finally get some help and have confirmation on the things that Shane and I already knew. She is on the very mild end of the spectrum. What we notice is that it effects her alot on the behavior end of things. She has trouble regulating her emotional response to things at times, she also has mild autism like symptoms, echolalia (repeating words and sounds, ie an ambulance sound over and over and over). We are having her monitored by an endocrinologist to verify that she is producing growth hormone. There are a few other things also. It's been nice to have a partial reason to put with some of her behaviors. Although Eves is crazy stubborn, determined and energetic there are times when it doesn't matter what Shane or I say or do she is just not going to process it at the time. Our early intervention teacher has been an absolute God send. She has given us some tools to help when Eves is having trouble processing, joint compressions, letting her hang on our arm or by a bar, rubbing a comb down her arm, tight hugs, backing off on things when we notice that she is getting to a point where she is going to have a break down because she is stressing about it too much. These tools have made a night and day difference in Eves. We aren't getting 3 hour non stop screaming and crying outbursts that we can't stop, she is listening better, connecting with us, asking for loves and hugs, talking and communicating more. She is like a different kid in so many ways. It explains so much about her reaction to us when we first got her. I only wish we would have known about this so much sooner. I think it would've saved alot of heartache on all of us.
Jaili and Evie are doing amazing together. There is nothing like watching your kids play, get along and love each other without a care in the world. Jaili has been taking the big sister duties very seriously. Sometimes too much, as I have told her she cannot send her sister to the no no wall.
It's been almost 1 year since Eves was brought to our family and what a difference a year makes. We continue to work on things everyday. There are good and bad days but Evie finally accepts us and loves us as her family and she is the most wonderful addition to ours. There is never a boring day in our house, Eves makes sure of that : ). There have been many times where I wondered if this was really the path that God chose for us or did I rush things. It's hard having day after day after day of tantrums and constant reminding of not to touch this or stop doing that. You feel like nothing is getting through and at times when she's having some of her processing problems it's not. But it truly a miracle to me to see how my doubts have faded. It's a miracle to look into my youngest daughters eyes and know that she was meant to be with us. That she is as much a part of me as my own flesh. That she is home, with her family and that I love her so entirely and completely. My relationship has been like a crockpot with Evie, slow to cook but man you get something pretty fantastic in the end. Jaili's more like a BBQ, you don't have to see it cook to know it's good, it just is and always will be. Good thing crockpot and bbq dinners are my favorite. (I'm hungry, can you tell)
The girls are 2 of the most beautiful, complex, wonderful people I've ever known and they are mine and my husbands daughters! I'm not sure why we were so blessed with them but we were and I am thankful every second of every day that God picked US to guide them through there lives. It's a miracle to look into Jaili and Evie's eyes and see the love of God shine back at you. Looking at the love and happiness in their faces is like looking into heaven. It is so bright and beautiful that you can't look away and makes your heart want to explode with the amount of adoration and love that you feel. It fills me with purpose in my life to keep heaven in their eyes..
Sorry I got all gushy there for a minute. As I was writing I realized just how far we have honestly come and I was overwhelmed with emotion for a bit. On that note I will end for today. I'll update when I feel the urge again.